A Call for True Medical Assistance in Dying for Minors

By Joel L. Gamble, Nathan K. Gamble, Michal Pruski

If you ask medical students why they seek to enter the profession, you will hear stories about physicians who made the sick whole. Some felt the call of the Healing Art as they witnessed restoration in a close family member, or experienced it themselves. Though the sick were not always fully cured, all, in some sense, were healed.

For two of us (JG and NG), a similar motif drew us into bioethics. When we were children, we had a friend named Emily, a bright, athletic, artistic girl, who around age eight began showing worrying symptoms.[1] She was diagnosed with metachromatic leukodystrophy, a rare neurodegenerative disorder, and was given mere years to live. She has not only surpassed this expectation but has already achieved more than many adults do in a lifetime, including being the inspiration for Emily’s House, Toronto’s first hospice for children. Even more remarkable is Emily’s winsome smile. Though her disease has robbed her of the ability to walk and speak, Emily communicates her joy in a beautiful, expressive manner. Her gifts far exceed her needs.

Emily has received care from exceptional physicians. However, she also had ominous encounters. Once, a physician hinted to Emily’s mom that her daughter was leading a life not worth living. Another physician informed Emily’s mom that Emily’s tenacious hold on life was a ‘scourge’ to their approach to palliative care. Fortunately for Emily, since her transition to adult care at age 18, she has been spared from such encounters. Yet during medical school we have heard similarly presumptuous sentiments from colleagues about ‘low-value’ patients, whose lives were judged to cost more than they were worth. Such sentiments should give us all pause.

Aristotle observed that a king, by virtue of his power, may effect either  great evil as a tyrant or great good as a just monarch. Likewise physicians exercise substantial and sometimes even disproportionate power over their patients, especially vulnerable ones such as children. As Margaret Mead said,

[The Hippocratic Oath marked one of the turning points in the history of man.] For the first time in our tradition, there was a complete separation between killing and curing. Throughout the primitive world… He who had power to cure would necessarily also be able to kill. [But in Hippocratism] the distinction was made clear. One profession, the followers of Asclepius, were to be dedicated completely to life under all circumstances, regardless of rank, age, or intellect – the life of a slave, the life of the Emperor, the life of a foreign man, the life of a defective child [emphasis added]. [The Hippocratic tradition is] a priceless possession which we cannot afford to tarnish; [yet] society always is attempting to make the physician into a killer… [It is] the duty of society to protect the physician from such requests.

And, in turn, it is a duty of physicians to protect patients, especially vulnerable ones like children, from the suggestion that they should end their own lives.

Hence the concern when ethicists at SickKids, Toronto’s eminent Hospital for Sick Children, defended the idea of paediatric euthanasia and proposed a policy for its execution. Their paper leaves a plethora of questions unanswered. For example, the thorny question of capacity remains unresolved: If society does not deem minors sufficiently mature to buy cigarettes and cannabis, or to volunteer for battle, how can they be mature enough to consent to be killed?

More troubling, though, was the ethicists’ basic premise, that physician-induced death is ethically the same as two common, widely accepted end-of-life decisions: Withdrawing life-prolonging but disproportionately burdensome interventions, such ventilator support; and sedation (and possibly hastened death) that results from attempts to palliate symptoms using drugs such as morphine.

The ramifications of their claim are vast. They should trouble even those who ultimately find themselves favouring paediatric euthanasia. For if the logic holds (which it doesn’t – so we argue in our response paper), that sedation and withdrawal-of-care are morally equivalent to euthanasia, what are parents to do who are mourning their child’s incurable sickness, but who cannot accept that killing is a form of caring for their child? They will have to refuse precious medicines that could have alleviated their child’s pain and breathlessness. They will feel forced to prolong burdensome treatments that can never cure.

Thus, efforts to improve access to palliative care may be jeopardized by a push to merge physician-induced death with palliative care. Now that euthanasia is legal in Canada, it is even more necessary to maintain clear  distinctions between palliative care, withdrawal of burdensome care, and deliberating causing death.

The sick cannot always be cured. In the end, physicians and patients must acknowledge the finitude of life and the Healing Art, including when the Art’s attempts at cure may reasonably cease, having become more burdensome than they’re worth. That is not to kill, but rather to accept death, come though it sadly does, even to children. Yet so long as life exists, the Healing Art can strive to foster health – palliating pain, alleviating symptoms – even if only through the physician’s caring touch and gentle words. Such is true medical assistance in dying.

 

Paper title: To die, to sleep, perchance to dream? A response to DeMichelis, Shaul and Rapoport

Authors: Joel L Gamble*, Nathan K Gamble*, Michal Pruski^

Affiliations: * MD Program, University of Toronto; ^ Manchester Metropolitan University

Competing interests: None

[1] Emily’s mother, on behalf of Emily (who is unable to give consent herself), has granted us permission to share this story.

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